Hi, all. It has been a while. Bear with me – we have a lot to catch up on.
My last post, "I'm Not Okay," was written just a few short weeks before the pandemic started in 2020 and my home state of California was put into lockdown. Since that time, I have thought over and over about writing again. But every time I tried, I was stuck. Blocked. And not just the typical writer's block we are all familiar with -- I felt frozen in place, unable to move, not knowing when or if I was ever going to come out of a seemingly endless hole that I fear has still not reached rock bottom. What was I supposed to write about? "I'm Not Okay... Still?" I did not want to admit that. I wanted to have something to write about that lent itself to positivity, which I have had a shortage of for a long time.
If you know anything at all about me, you know that the one thing I refuse to do (okay, I'm pretty stubborn, so maybe not the only one) is represent myself to be anything but who and what I am. I believe in telling the truth, not sugar coating things to make others comfortable at the expense of my own authenticity. This has kept me quiet to my detriment. It has left me alone and isolated, not just as a widowed woman living by myself which has rendered me virtually a recluse for over a year and-a-half, but because I constantly feel like the weight I carry should not be shared with anyone. It seems unfair.
Instead of pursuing my passion for writing and delving into the deeply honest and painful experiences that have been happening since the first COVID lockdown, I have retreated deeper inside, distancing myself from but a few people in my life. Worse still, others who meant a great deal to me distanced themselves from me, without conversation or true understanding, leaving me to grieve the loss of those important relationships. It has not felt safe to talk about. I do not want to be judged. I do not want to have my character questioned. I have worked hard for many years to disregard what others think of me, but here’s the truth: it is me who is doing the judging and questioning. But I know that so long as I continue to draw further away from humanity, the less of a chance I have to become the woman I am meant to be. Staying silent for fear of speaking my truth has not worked. I also know that refusing to accept help and support from those willing to give it can be fatal. So here goes.
I was struck recently by something I heard in one of the virtual fitness classes I take every week. One of the instructors asked, "Do you remember when you prayed for exactly what you have right now?" It stopped me cold. (Well, once I was done with the class, because Lord knows I am not going to stop once I've started.) I do remember when I prayed for what I have right now. When I gave up what felt like not just a job but the career I had been working for and humbled myself by moving back home with my parents four years ago, all I wanted was a home to call my own and some space to heal. I did not care about having a prestigious position, magically pulling myself out from under the crushing weight of student loan debt, or even knowing what the next day might bring. I walked out of that dark space with conviction that somehow, some way I would land on my feet again. It was terrifying, but the relief of letting go of control over the outcome was also the most liberating thing I could have done. I was so proud to have taken those critical steps.
Slowly but surely, I did start to heal. I spent time in silent meditation and reflection on a daily basis. I paid attention to the signs the Universe was sending me, regardless of where they might lead. I trusted that I was not in control of my destiny, or wherever I was heading. In short, I was living my life with faith that no matter what, I would be provided with what I needed. No. Matter. What.
That faith led me to a job that, while it was not saving the world or fighting for social justice, provided me with the means to move back out on my own. It was an easy enough job, and I was able to see that I did not have to burn myself to the ground to prove anything to anyone, because I was confident in my skills and abilities. Was it what I wanted to do? No. But the job did not have a billable hour requirement. A legal job without billable hours?! This was unheard of up until this point in my career. Sure, the subject area did not ignite the passion I craved to motivate me. But my boss was nice, the hours were reasonable, and it gave me time to have a life outside the four corners of my office. At the time, it made total sense. It was what I had prayed for.
I started to open up and trust that I was capable of true connections with other human beings. I built friendships, had a brief and wildly unsuccessful stint in the dating world, and found hobbies that helped me to feel something. I felt empty at work, but I hoped that the something I felt in those relationships and activities would be enough to overcome that dark morass that was ever-present and growing in my soul, which came from the knowledge that I was not doing what I was meant to do. I pushed that aside and stayed busy. I ignored the gnawing in my gut and told myself I should just be grateful for what I had. Nobody likes their job anyway, right?
Then COVID happened. When the pandemic hit and I transitioned to working from home, I lost access to most of the things outside of work that made the work itself tolerable. The cycling studio where I taught classes and the martial arts gym where I did Muay Thai were forced to close their doors. My annual trip to Washington DC to advocate on behalf of the brain tumor community, which I counted on to give me the shot of life I needed to propel me forward every year, was cancelled. Each of these losses felt painful, but I was sure that it would all be over soon.
Sigh. We all know how that turned out.
Without a doubt, I was grateful to have had a job that gave me the opportunity to keep working and stay at home. This was important because for several years preceding the pandemic, I struggled with severe chronic pain and migraines, along with the challenging mental health issues I have discussed in prior posts. When the world shut down, I learned that I was “immunocompromised” from the immunosuppressant medications I take to combat my ever-progressing autoimmune disease, and that I needed to take extra precautions to prevent getting COVID. This meant that aside from my “COVID pod” of about three people whom I knew were taking the virus seriously and my family, I was no longer seeing anyone, except my pharmacist.
With the myriad of issues described above, it did not take long before I began to deteriorate. In spite of my efforts to remain engaged with the world, the longer the pandemic went on, the worse my physical and mental health became. I was in so much pain every day that I would spend hours lying on the floor next to my desk, sometimes trying to read my files and keep working but often being unable to due to my extreme sensitivity to light and sound. I had been diagnosed with a rare headache disorder called hemicrania continua (HC), which literally means “one-sided continuous headache,” a few years prior, so I am not exaggerating when I say I have had a headache for five years. (It is not a "just take a Tylenol" kind of headache. It starts like an ice pick in the back of the skull and gets worse from there, and causes a wide array of other symptoms and neurological problems.) Many days each week these headaches developed into full-blown migraines where I would have to stay in bed with the blinds drawn, forcing crackers and ginger ale into my nauseated stomach to keep my body alive. The range of motion in my neck, which I had been having problems with for years, worsened to the point of being unable to turn my head to the left. Flares of both my autoimmune disease (axial spondyloarthritis (AS), an inflammatory arthritis of the spine) and HC were occurring so often I was having no good days, pain-wise.
The loneliness of isolation, intractable pain and discomfort, and insomnia which to this day gives me an average of four hours of sleep per night began taking a severe toll on my mental health. I fell into a deep depression, as bad as it had been after my husband Patrick died. I was full of anxiety over my health issues and how difficult it was making it to get my work done, though for a time I was able to manage by working at odd hours of the night and on weekends when I would have enough stamina to sit in front of the computer for more than a few minutes at a time. I finally reached a place of total apathy with absolutely no care whether I lived or died, and that is when it hit me like a ton of bricks: I was afraid of my own mind. Again. It was not the profound sadness or panic that frightened me, as they had become some of my closest companions over the years. It was the fact that nothing mattered anymore. That is when real concern arises for me because I do not know how far I would be willing to run with those thoughts. That is the kind of mindset that could lead someone like me to a permanent solution for a temporary problem.
A number of doctors, specialists, and mental health experts attempted various interventions to try and manage my chronic pain and increasingly troubled mind. I had a dozen epidural and trigger point injections in my neck and back. I had Botox in my scalp, neck and shoulder to try manage the headaches, as it is supposed to block neurotransmitters that carry pain signals from the brain. MRI after MRI on my neck and back showed progressive worsening. I cannot count the number of medications that were tried, rendering me a full-fledged science experiment. Nothing was working, and working was becoming impossible. I was forced to go on short-term disability for what I was hoping would be a brief period to “get it together.”
The medical treatments continued, including surgery to have artificial disc replacement at two levels in my neck. More challenging than recovering from my second spinal surgery, however, was and continues to be working on my mental health, the necessity of which was confirmed when my “COVID pod” decided I was no longer a welcome member and any reason to leave the house all but disappeared. In a previous post, I talked about EMDR (Eye Movement Desensitization and Reprocessing), a type of psychotherapy that is designed to alleviate the distress associated with traumatic memories. I have continued this diligently with my therapist who specializes in complex PTSD once, sometimes twice, a week. It is frightening, heart-wrenching, and physically exhausting. I wear a fitness tracker on my wrist which records basic vital signs and shows that when I am “in” a memory we are trying to reprocess, my heart rate jumps to between 190 and 200 beats per minute, all while sitting in an armchair. The physical strain is often more difficult than a 60-minute cycling class. None of this is helped by the ongoing trauma inflicted by the medical system itself which I spend hours each week dealing with, simply trying to get the treatment my clinicians recommend and are supported as medically necessary. Attending to my health is more than a full-time job, but I do not get to bill any clients for my hours. Instead, my bills keep coming, and each minute spent fighting for my care takes a little more of my soul.
As of this writing, nearing a year after my “temporary” break, I have not been able to go back to work. I cannot tell you the amount of guilt and shame I have surrounding what feels like abject failure to live up to what I “should” be. I have realized that this is the real reason I have not been writing. I am embarrassed to watch my peers live their lives, raise their children, run their businesses and take vacations while I sit on my couch, with too much brain fog from the combination of chronic pain and medication side effects to even attempt to read a book. Do not even get me started on the financial toxicity of chronic illness and the interplay with my self-esteem. But I submit to you that this year, while not earning a paycheck and being forced into submission by my body and mind, I have never worked harder in my life. Sitting with my feelings; facing and reliving the most traumatic moments I have ever experienced; suffering frequent panic attacks and flashbacks as I comb through the realms of my trauma-ridden mind; uncovering the terrible beliefs about myself that became so deeply imprinted at such a young age that they have informed almost every decision I have made; unremitting physical challenges from chronic illness which I struggle to accept every day, often at my own expense by overexerting myself in a feeble attempt to prove that I am not as limited as I am; all of these things have been far more arduous and agonizing than studying for the Bar exam, or working in any of the less-than-satisfying jobs with insane billable hour requirements that have comprised my entire legal career.
I used to joke that I always felt like an alien in a room full of lawyers, drowning in suits and pearls that made me feel like I was playing dress up. This was not because of imposter syndrome, i.e. an inability to realistically assess my skills and thinking that I was somehow not smart enough to be among them; fortunately, the work I have done over the years has given me confidence in my capabilities as an attorney. What it really meant was that I always felt so different from the rest of them. And this was not limited to other lawyers - it applied in all areas of my life. It is difficult to figure out how to live in this world when I do not feel like I'm of this world. I have never felt like I fit. Square peg, meet round hole. (I’m peg.)
When I look at my current state of affairs, I have to remind myself that this gut-wrenching soul work is what most people do not dare look at. Our culture teaches us to “suck it up,” “tough it out,” and other maddening ways of telling us to shove the painful stuff down deep where we cannot see it and carry on, business as usual. The refrain that has been running through my mind for as long as I can remember -- "What is wrong with me?" -- has played on endless repeat because I simply cannot do what society says I must, namely pretending everything is okay when I am dying inside.
I know the narrative that runs my twisted thinking needs to be changed. It starts with asking what is right with me, not what is wrong with me. I am learning that my willingness to bare my soul, dissect the ugliness, and dismantle the lies I have been telling myself my whole life does not make me weak. Being deeply moved by life and all its complexities does not make me fragile and powerless. Healing personal and generational trauma at the expense of my own comfort and ease is not something tasked to those unequipped to survive what often feels like an unyielding barrage of assaults.
Since Patrick got sick more than seven years ago, I have frequently said I do not believe the saying “the Universe never gives us more than we can handle,” because it has felt like I have had much more than my share for a really long time. But I must concede that, in spite of it all, I am still standing. When I fall, sometimes I need to lay down for a while, but I always get back up even if it takes longer than I would like and feels like I'm being dragged by my ponytail. I have not resigned myself to my current quality of life because I know I deserve better. I know from the deepest place inside of me that my life experiences, my passion, my education, and my talents are not going to end up wasting away on a couch, serving no purpose other than my own misery. I do not know what it looks like or how I will get there, but I know I am going to be able to help people on a bigger scale than I can contemplate now. What that tells me is that I am not doing life wrong. In fact, I think I just might be the one doing it right.
I am still trying. And I am still here.
The title could say it all, but please allow me to elaborate. I am not okay. In so many ways, I am SO NOT OKAY.
I barely write on this blog anymore, and it's not because I don't have a lot to say. It's because I feel like the world's biggest Debbie Downer. I am afraid that people are sick of hearing about my problems. I feel like a gigantic burden on my friends and family, when there has been so much tumult, pain, trauma, and chaos for so many years. Logically, I know that the people who truly love me would never feel this way. They are always there, and they always listen. But when it feels like it has been so long since you've had anything positive to report, sometimes you just stop talking. And that's when things can get dangerous for a woman like me who has lived in varying states of depression, anxiety, and suicidal ideation resulting from PTSD for most of my adult life.
The darker it gets, I start to withdraw from life little by little. I stop talking about the endless doctor visits that are bleeding my bank account dry yet providing no real answers or solutions to my intractable chronic pain. I lose hope that there is any real purpose in continuing to advocate for myself and my health, because if I hear "the results are normal" or "the result's AREN'T normal but there's nothing we can do to help you" one more time I fear I will actually shatter into pieces. I kid myself that I have a social life, because I am around people all day every day - at work, at the gym, teaching my spin classes. But there are so few people I can actually bring myself to invite into my inner circle that my world is getting smaller by the day. Even the people I can allow in, I find myself holding them at arm's length, as if to say "I need you, but please don't come too close because I can't bear the searing pain of losing you." Historically, I have been one of the most affectionate people I know, and recently I have noticed myself pulling away when people hug me. Not people I don't know well enough to share that intimacy with - we're talking about the people I love the most. Some of that comes from the trauma that has been uncovered in therapy recently, I know that. But some of it is just because I am scared that the next person I lose will actually be the end of me.
They say grief can't actually kill you, but I wouldn't be so sure. When my husband died of glioblastoma on July 11. 2015, a part of me went with him. That part has never healed and I have accepted it won't, and that's the consequence of loving someone so thoroughly - there will always be a Patrick-sized hole in my heart. What I didn't expect was the PTSD diagnosis, the ensuing fear of new people and relationships, the deep-dive back into disordered eating, the overspending that I am going to be dealing with for years... the hole that I dug, just trying to survive. Now, I am left with the guilt and shame of those decisions that I made. Yes, I know that I was literally trying to stay alive. But no, I haven't been able to extend enough compassion to myself to accept it.
Something that came up for me today in therapy was the realization of just how heavy the weight of my astronomical student loans is. I went to law school as idealistic as they come, thinking that I was on my way to saving the world. I took out the maximum I could in loans because I was working as a volunteer throughout my years in law school for the public defender in the county where I went to school, assuming that's what I would be doing once I graduated and that I'd be eligible for loan forgiveness in ten years. I graduated second in my class and passed the Bar exam the first time, but low and behold I entered a tanking economy where every county in my state was on a hiring freeze and I could not get a job doing what I loved. Instead, I had to find work, so I stumbled into a series of insurance defense jobs over the past ten years that have never felt like I was doing what I was meant to do. Yet, I have never been able to re-enter the public sector or take a non-profit job, simply because my student loans are so huge that I cannot afford to pay them AND live in California on the salary of one of those jobs. Then enter into several years of having to go on disability during the time my husband was sick and after he died, first to take care of him and then to deal with my own mental health, and you've got years of interest accumulating at a pace that cannot be thwarted.
I graduated law school with $160,000 in student loans. Ten years later, they are closer to $240,000. I owe almost a quarter million dollars because I wanted to help people and not push paper for a living. Now what do I do? Mostly push paper, and cry because I have taken one vacation in the past 12 years since I feel too guilty to spend the money when I have so much debt. It's the albatross around my neck that there's no way out of. I have no financial back-up, no spouse to chip in on the bills, and a system which has zero empathy for your personal circumstances. I should know. When I first went back to work part-time, for a few months I had to delay payments because they miscalculated my income-based repayment plan. They reported me to the credit bureau and my credit dropped 250 points, during the time my car lease was up. My dad had to co-sign my loan because my credit had been destroyed. I was 35-years-old, a lawyer for nine years, and my dad had to co-sign for me. I was humiliated. Thankfully, after six months of fighting it was finally resolved, but the emotional toll it has taken in knowing that there is literally nothing I can do to negotiate or deal with my loans has been done. If there was, I would have done it. (I remember Googling "what countries do not have extradition treaties with the US" in my first year of law school, wondering how I could hide from the IRS. Let's just say I saw the writing on the wall early... and also, that the list of countries was not ideal.)
I am not going to apologize for the word vomit today. I am struggling and I know that if I keep it all in like I have been doing, I am going to actually lose it. It's hard to explain what it's like to someone who has not dealt with mental health issues before. I am not sitting here with a plan to off myself - please let me be clear about that. But it is scary and so sad to feel like you're often asking the Universe to end your suffering, even if that means ending your life. (Please do not 5150 me. If you have more questions about this, please just ask.)
I want to tell you that I believe I can be both grateful for my life and the things that I have, and angry, sad, and overwhelmed by the ongoing struggles. These feelings do not exist independently. I am not a believer that fear and faith cannot coexist, because they do frequently in me. I do a lot to "get out of myself" and to focus on being of service to others. But sometimes, I need to be able to tell the truth and acknowledge my feelings, because they are valid.
Thank you for hearing me.
I am one tough, badass woman, if I do say so myself. I am resilient. I am strong. No matter what comes, I can, and will, move through it. These are not just mantras I repeat to myself, like I did half-halfheartedly in my younger years, desperately hoping that if I said the words enough somehow I would begin to believe them. These are my unequivocal truths, borne out by experience and proof that I am a survivor.
It hasn't always been this way. I have done a lot of work to get here. I am still in the process of working through some old trauma that, until recently, I did not realize I hadn't fully dealt with. I didn't know that these experiences have permeated every relationship I have had, platonic and romantic. I didn't know that they prevented me from ever feeling like I was safe, or that I could fully trust my own judgment. I thought the combination of talking about them in therapy, working through the resentments in my recovery program, and the simple passage of time meant that they no longer affected me.
I was wrong.
If you've read my blog before or know me personally at all, you know that I was widowed at age 31 when my loving husband Patrick died ten months after being diagnosed with glioblastoma, grade IV brain cancer. My grieving process, which arguably continues today and will always be an important part of the fabric of my life, was long and difficult. I shared in recent blog posts about what it was like to attempt to reenter the romantic arena about a year ago through the bizarre world of online/"app" dating, which was enlightening, uncomfortable, and ultimately pretty short-lived. What I have not shared is how one of those experiences resulted in triggering horrific past trauma that put me back in a position of feeling constantly afraid, vulnerable, and unsafe. I finally feel like I am ready to talk about it, and I think it's important that I do because it has reluctantly become an important part of my story.
In December of last year, I went on a lunch date with another lawyer who was visiting my town for a court appearance. Because I am not interested in casual flings, it seemed silly to bother meeting someone who did not live here; but he was persistent, and I was trying to learn how to go on dates without expectation and to learn more about who I am and what I am looking for. So, I agreed to meet him. We went on one lunch date, which did not go well for a variety of reasons. There were red flags left and right, and my intuition told me that this was not a healthy person to be involved with. Some of the things he shared were cause for legitimate concern, but since he did not live in the area and the conflicts between us were so obvious, I figured I would never hear from him again and that would be the end of it. And so it was -- at least for a few months.
At the beginning of March, this person sent me a text message and informed me he was moving to my town. I found this strange, since he told me when we met that he did not know anyone in the area and had a young child where he was living at the time. The town I live in is relatively small, and the legal community is even smaller, so the last thing I wanted was to have a conflict with him. He asked for information about the firm he was going to work for, which I did not have, and about the surrounding area because he was looking for somewhere to live, which I provided. I kept it light, offering nothing but responses to the questions he asked.
A few weeks later, I received a text message from him telling me he had decided on a place to live, followed by "Hey, I like you and think you really would love dating me. We could take over the world together. Let me know if you're interested." The narcissism oozed from his words. I was obviously not interested, but I did not want to provoke any issues, so the next day I told him I appreciated him reaching out, but it was pretty clear to me when we met that we have very different values that I didn't see us being compatible in a romantic way. I wished him the best, and hoped this would be the last communication. Unfortunately, it wasn't.
A few days later I began receiving a series of frightening, threatening, belligerent, and incoherent text messages from him. He was calling me names, ranting about the Devil and the Book of Revelations, and saying awful things about my late husband. I never responded to a single message, though this continued for several hours. I was forced to call the police because I did not know whether he was already living in my area and if he had access to public records so that he could find my home address. To this day, it remains unclear to me what incited his rage, but I felt extremely threatened and unsafe. I ended up getting a Temporary Restraining Order, which he responded to by hiring counsel and causing substantial delays in the process. We ended up taking the issue all the way to trial, where he called me "one of those #MeToo people" in front of the judge. He seemingly saw that as some kind of insult, though it was more true than he even knew. It took several months, but I ended up winning my case and the TRO was made permanent, at least for a few years. He still ended up taking that job and moving here, and his office is less than a mile from mine, but at least I know I am legally protected for the time being.
To someone who has not dealt with trauma and issues like PTSD, my response of involving the police might seem extreme. (If you had read the text messages themselves, you'd be less inclined to think so.) However, what this experience did was trigger unprocessed trauma from years ago. What I have never shared publicly is that I, like most women, have been a victim of assault and abuse at the hands of more than one man. The first of those experiences happened when I was 19 years old. I was attacked at a party by an ex-boyfriend whose 6'2", 220+ pound body forcefully snapped my neck back so hard when he started to choke me that it caused whiplash. After agonizing over the decision, I told one of my college professors, who took me to the campus police, who then brought me to that same police department who got involved in the current case. I went through the process of getting a restraining order, going to court, and watching as ultimately the DA declined to pursue the case against him in spite of my injuries. I felt violated not only by my ex-boyfriend, but by the system itself when it either failed to believe my story or decided "he said, she said" wasn't going to help their conviction percentages and they decided not to take the case to trial. Subconsciously, it ended up being a big driving factor in me going to law school, originally wanting to become a DA -- I wanted to help other people who had been victimized, so that they would not feel alone and unheard.
This experience is not the only time I have been abused at the hands of someone I once loved, but I share it in order to provide context that might give you a window into what happened to me when I started receiving those threatening text messages. It was instantly like I was right back in that fraternity house as a teenager, terrified of what might happen next, unsure of whether I would walk out of that room alive. The day after receiving the text messages, I went to the store and bought a stun gun, pepper spray, and a knife that I began to carry with me at all times. I spent hundreds of dollars installing security equipment on my home, including alarms on every point of entry. I started to avoid leaving the house if it wasn't necessary. I began taking Krav Maga self-defense classes, which ultimately I couldn't handle because the simulations were too terrifyingly real and I would be nauseated for hours after I got home. My anxiety sky rocketed in large crowds. When I would arrive at the studio where I teach spin classes in the morning, it would still be dark outside, and every time I was scared to enter the building. I began to withdraw from humanity - not just strangers but my friends, too. That deep, unfiltered belief of "You will never be safe and you cannot trust anyone," regardless of the logical facts to the contrary, played on a loop in my mind every day.
All of this came to a head about a month and a half ago when I got a call at 6:30 AM while teaching a spin class from my home security system notifying me that one of the alarms had been tripped. I went home after class and although I should have called the police to enter the house with me, I entered alone and found the door between my garage and kitchen propped open with all the lights on. There is, quite literally, no way for that to happen without someone physically opening that door. It appeared that they must have entered through the garage, though I don't know how they got in. I don't know if somehow the garage had accidentally opened, or if someone opened it manually. After clearing the house and confirming nothing was missing, I called the police again to make a report. Because nothing had been stolen there was really nothing they could do but record the incident. At the time, I didn't have a camera on that area of the house, so there was no way to know for sure what had happened. I didn't know if it was the text message guy. I didn't know if someone had been watching me, and knew my schedule and that I would be gone at that time of the day. I wasn't sure if it was worse to think that whoever it was knew I wasn't home, or that they thought I would be. What I did know was, yet again, my sense of security was violated and I was terrified. I installed more cameras on the house, but that did little assuage my fears.
PTSD lives at the cellular level, and when it is triggered, my experience is that you live in a veritable hell until you can get to the other side of it. Those all-too-familiar feelings of suicidality returned. I knew implicitly that the intensity of my reaction was not because of the text messages; rather, it was more from those old traumas that were still affecting me. I finally decided that it was time for me to find a new therapist, preferably someone specializing in trauma and PTSD. It is not easy to find help like that in a small town, and even harder to find someone that both accepts your insurance and is accepting new clients. But, as the Universe always does, it showed up for me and led me to the perfect person to help me.
A few weeks ago we started EMDR (Eye Movement Desensitization and Reprocessing), a psychotherapy treatment designed to alleviate the distress associated with traumatic memories. Much like the hypnotherapy I did while working with my grief counselor after Patrick died, at the start it was horrific to revisit that night in college. I was flooded with overwhelming feelings of terror. I became aware of the fact that I felt a lot of guilt and blamed myself for what happened. I had never truly forgiven myself for the belief that I put myself in a position to be hurt. Regardless of the fact that nothing I could have done ever would excuse my ex-boyfriend's behavior, I still held anger towards myself for that night. Slowly but surely, I began to soften towards the teenage me who had zero coping skills, was an active alcoholic and bulimic, and had absolutely no sense of self-worth. I imagined going back to that night, as the 35-year-old woman I am now, and holding that 19-year-old in my arms and letting her cry. I told her how sorry I was for what happened to her. I assured her it was not her fault. I told her she did the very best she could with the tools she had at the time. I also reminded her that now, unlike then, I have an arsenal of tools at my disposal to deal with the inevitable challenges life will throw at me. Unlike when I was a young girl, I no longer ignore red flags out of desperation for someone to validate my existence. I don't worry about what someone will think of me if I report their unacceptable behavior. I understand that the system might still fail me, but that does not mean that I failed.
By the end of a few sessions, I no longer felt like a victim of that experience. I felt strong and empowered. I began to trust myself more, knowing that it was not a result of a poor decision to allow a sick person into my life that this recent event happened. Instead, I saw the signs immediately. I did not allow the unhealthy person to share any part of my life. And when he acted out, I held him to account. I do not remotely resemble the trembling, helpless college student who blotted out the pain of that assault with drugs, alcohol and food. I have survived an eating disorder, alcoholism and drug addiction, the loss of my best friend and husband to brain cancer, chronic debilitating physical pain, and countless other life experiences that could have broken me. Regardless of what happens, I have always and will continue to move forward.
I still have work to do. There are some additional traumas that need to be dealt with, but you know what? I am actually looking forward to working through them. Why? Not because I am a masochist, but because I see the freedom that is waiting on the other side. I look forward to the day that my past serves only as a source of wisdom and strength for myself and others, rather than a trigger for anxiety and fear. I can tell that day is coming soon, and I am so proud of myself for hanging on.
I am, plainly, un-fuckwithable.
Four years gone. Never, ever forgotten.
I have not written here for quite some time, but felt pulled to do so today, on the anniversary of the worst day of my life. I imagine that it will always be the darkest day I have ever experienced, having to say goodbye to my best friend and the greatest person I have ever known. The memories of that day, and those leading up to my husband Patrick's last breath, are burned in so deeply that when I allow myself to remember it hurts as much as it did then. I feel like I am being asked to honor those days by sharing them in a way I never have before. It makes me uncomfortable to write this - so much so that my shoulders are physically trembling as I type - and even more so to think of allowing the world in. But I know that in doing so, I honor Patrick and his memory. It feels most natural to tell the story to Patrick, so that is the voice I will share this in. Many of the details are still too foggy to recall with any clarity, which I have learned is my mind's way of protecting me from the trauma. So, my disclaimer is that everything I say is to the best of my recollection. Nothing has been intentionally altered, but I know that I may get some of it wrong.
It was the day after your birthday: Friday, July 3rd, 2015. You had been receiving hospice care for about seven weeks. Remedial treatment for the Grade IV glioblastoma brain tumor that lived in your right parietal lobe had stopped. You were no longer able to walk, or write, or hold your spoon to eat your beloved Life cereal. But there had been no other major changes, nothing to indicate the end was imminent; that is, until that day. I woke up and felt something was off. You were still asleep in the hospital bed that had become a familiar part of our bedroom. I took your vitals and they were consistent with the days before. Your breathing was not labored. I got myself ready to go to a badly-needed massage appointment, but there was just this nagging, sick feeling in my stomach. I almost canceled the appointment, but my body was in so much pain from the constant strain of transferring you in and out of the wheelchair, bathing you, taking you out for walks so you could feel the sunshine on your face, and all the other things that came along with being your care partner that I knew I could not skip it. My body knew even before anyone told us that things were about to become very, very different, and made sure that I was prepared for the days to come.
Our trusted friend came over and sat with you for the 90 minutes I was gone. He was the only one who could manage your unpredictable symptoms when I was away. During that time, a hospice nurse visited. She was not your regular nurse. Our friend called as I was finishing my appointment to tell me what the nurse said: that you were in your final days, and that you might have a week left, or maybe only 24 hours. There was no way to know for sure. I remember my mind feeling shocked, but also that my body had already identified this when I woke up that morning. I rushed home immediately to take my place at your side. I would not leave the house again for the next eight days.
I barely remember the phone calls, texts, and other messages I sent out to let people know that the dreaded corner had been turned. You remained asleep most of the time, alert enough only to take your medication that by now had to be crushed up and given to you with applesauce. Any time your breathing changed I feared that we had reached the end. I only knew what Google told me about what the end of life was like from a physical standpoint, and what to expect. I did not yet know what it looked and sounded like to die.
On Saturday you had your last moments of being truly awake. You ate some of the leftover chocolate bundt cake from your birthday. We had another friend visit, and you closed your eyes. She and I began to talk, and I quietly started to cry. Suddenly, you opened your eyes and reached out toward me. You looked at me as you repeated some angry words over and over. It was like you were looking through me, not at me. I also knew it was that horrible tumor in your brain talking, not you, but I remember begging you to stop saying those words, afraid they would be the last words you ever spoke to me. Our friend calmly put her hand gently on your shoulder and said "Patrick, we are going to take care of Lisa. She's going to be okay." She said this over and over until you began to relax. The tension and sheer terror started to drain from your face, and you finally closed your eyes again. That was the last time you spoke, and the last time you looked at me.
There were so many visitors over the coming days. People came from all over to say their goodbyes. I felt like I was drowning in tears and sorrow. But you kept hanging on. In what seemed to be overnight, your strong and sturdy body began to wither away. I remember grabbing your bicep muscle one day and it was just gone. That was one of those signs I had read about, that the end was near. I was so afraid.
On Friday, July 10th, your regular hospice nurse came and confirmed that you could go any time. It still alarmed me, even though I had heard the same thing a week before. I still did not feel ready. We never had gotten to make peace with the fact that you were going to go. Your tumor had robbed us of that experience. A priest came with your family and performed last rites, adhering to the rituals of your Catholic upbringing. I don't remember what he said, but I could physically feel my heart shattering into pieces.
Beginning at around 5 PM that day, it was time for it to just be you and me. I didn't want anyone else to share those final moments. You were already being taken from me way too soon, and it felt like those hours were just for us. I talked to you about the memories of our lives together. I tried to make our bedroom as peaceful as I could: candlelight only, with our wedding playlist playing softly in the background full of Motown and Norah Jones and all of the other music we loved. I held your hand. Some of the hours, I laid next to you in bed. Others, I just buried my head in your chest and cried.
Your breathing became shallow and labored. It didn't seem like the morphine was helping. I was worried it wasn't getting absorbed into your system, though I tried to massage it into your cheek like they taught me. I was so afraid you were suffering. By now, it was the middle of the night on Saturday, July 11th. I had told you probably hundreds of times over the past week that it was okay for you to go, but I didn't really mean it. Now, I could see that you were nearly gone. I could not physically or emotionally handle another day of that level of pain. I had not slept in days, afraid to miss your last moment. I had heard that often people wait until you leave the room to let go, and I didn't want that to happen. I wanted to be there. They say hearing is the last sense to go, so with bloodshot eyes and all the courage I could muster I leaned in close and whispered, "Baby, I love you. I'm going to be okay. You can go now." That time, I really meant it, and you knew. Shortly thereafter, your breathing eased and slowed. I clutched your hand, tears streaming down my face. At 4:26 AM, you exhaled for the last time.
There are some things I want to say to you on this anniversary. I want you to know that you are loved as much as you were that day, and missed so much it still frequently causes my breath to catch in my throat. When we met, you used to say it was like God faced us toward each other and said “Okay Patrick, okay Lisa: here. This is what you’ve been looking for.” I knew you were it for me right from the start, in that cheesy way they say happens only in the movies. You were my movie love. We shared so much passion and so much struggle. I often wonder today whether it would have been sustainable because it was THAT intense. You were the kindest, funniest, most gigantic-hearted person I ever met, and you still hold that title. You made me want to be a mom, because you were the very best dad I had ever seen and I knew you’d be the same to our kids. We didn’t get the chance, and that still hurts.
You know how hard I have struggled to carry on without you. The memories that I have shared here today haunted me and played on a loop for years. I cannot tell you how often I wanted to die so we could be together again. I remember begging God to take me out so I did not have to live on with the weight of your absence. But through hard work, a lot of therapy, every spiritual remedy you can imagine and so much soul searching, I have lived on. It has rarely been graceful or dignified, but I have lived on.
I have learned that I’ll always have that ache in my heart when I think of you, and when I think of us and the life we might have had together. I have accepted that the pain is still so gut wrenching because it’s commensurate to the size of the love. And that was huge. I also know you are my #1 cheerleader and that you are so proud of the steps I have taken forward. I can feel you laughing with me on every bad or pointless date I've been on. I know it pains you when I’m treated with less respect than I deserve. I know you want me to find the companionship I have started to hope for again. I feel you along side of me as I try to forge ahead, often stumbling, frequently in pain, but continuing to move through it even when it’s excruciating. I feel you, even though I can’t see you anymore. Oh, how I wish I could.
You will always be my person, no matter where you are.
I did it.
At long last, I have managed to return to “real” life. I am working full-time as a lawyer again. I am teaching spin classes, loving every moment of grueling sweatiness in front of a candlelit room. I have continued my volunteer work as an advocate, most recently attending the “End Well” conference in San Francisco, a day-long symposium focused on making the end of life experience more patient-centered. I am active in my recovery program, sharing my experience on how to get and stay sober with several beautiful young women. I am working with a personal trainer who challenges me at every one of our twice weekly meetings. I am regularly hiking trails that six months ago I could barely have completed. I remain focused on my spiritual practices, and though the attention they are given wanes occasionally, I don’t have to step too far out of line before I am gently (or violently, as the case may be) reminded of their necessity.
I am busy nearly all of the time. My life is full. I am content. I feel good about myself when I look in the mirror. I am so proud of the progress I have made, and so grateful that the Universe has seen fit to allow me to rejoin the human race.
So, naturally, it was also time to throw a wrench into the mix and start dating.
I had once dipped my toe into the online dating app world about a year and a half ago, and found the experience to be miserable. All the potential suitors I “matched” shared little in common with me, nor was I much attracted to them. I went out with one guy who half way through our second date started repeating stories, and I realized he had already reached the end of the “who am I” conversation. I was shocked – I mean, I wasn’t even through adolescence yet! The truth was, I simply was not yet ready at that point to date; the pain of losing my husband Patrick to brain cancer still too fresh. It was no wonder that everyone I found little or no connection with anyone. After a few terribly dry dates and a grand total of two weeks, I swore off dating apps for what I thought would be forever.
It all started just over a month ago. One of my close girlfriends told me she had just joined a dating app – and not just any dating app, but the very one that I had solemnly and a bit self-righteously declared myself too good for just a year prior. She shared with me the first few interactions, and they didn’t seem so bad. All that week I kept getting nods from the Universe that it was time to try again, which I first tried to ignore. Gradually, these nods became more persistent, and more obvious. “Really?!” I remember asking the Universe out loud. “Why on Earth would I subject myself to that nightmare again?” The answer, it seemed, was because it was time and there were lessons for me to learn.
That weekend, I was out to dinner with two of my closest friends, a couple who met on one of the most well-known dating apps. They were a great success story: completely in love, married, and expecting their first child. We started talking about dating, and how it might serve me to try and “put myself out there again.” Finally, I conceded that they had a point when they asked “What’s the worst that can happen? You don’t enjoy it, and you delete the app again.”
Somewhat begrudgingly, but with a notable hint of amusement, we downloaded the app on my phone during dinner. They picked out all the pictures I should use and helped me to keep my “profile” (read: sentence-long blurb without any real possibility of providing insight into who you are) light and funny. I am not sure why, but I didn’t expect to match with many people – but within a couple of hours, I had over a dozen connections. I was immediately overwhelmed! How was I supposed to manage talking to one person, let alone all of them?! I didn’t have the emotional bandwidth for that! Sensing my panic, my kind and patient friends told me not to worry, and that I did not have to talk to any of them if I didn’t want to. They reminded me that I was in charge, that I was the prize here, and that my self-worth was not tied to the outcome of any of these interactions. It was just what I needed to hear, and I took a deep breath, and said my first “hello’s.”
The very first guy I talked to was handsome, funny, and witty. He was also interested in meeting up in person right away which, although it caused me to take a hard gulp, I really appreciated because I honestly had no interest in texting some random person for weeks on end without it materializing into anything. I have real friends and real relationships for that! I also have zero interest in playing mind games with people, or wasting my time.
We set up our first date for the next day, and it went great. We talked for hours. There were a few things that gave me pause, but I tried to give him and the situation the benefit of the doubt. We went out again the next day. And the next. It was like a three-day long crack binge of attention that I had not experienced since the early days with Patrick. I also knew intuitively that it was completely unsustainable; no one could ever maintain that level of engagement because, you know, we have lives to live! I saw my historical pattern with relationships of jumping in with both feet without a life vest immediately repeating itself, and although I knew this was probably not going to turn out like I wanted to, but I went with it anyway. All I wanted was another hit.
It was not long before his true self started to be revealed. I realized that he had lied about several things, some really important, and some of those white lies that you don’t even know why someone bothers lying about because they don’t have to. Within a few weeks, I felt like I had been kicked in the teeth, and I knew there was no way that I could continue to see him without completely compromising my own integrity and self-worth. It felt crushing, because even though our interaction was so short-lived, it had been intense and in some ways amazing. I found myself wrought with disappointment. The desire to close my heart off again came strongly, but I refused to do so. I know the best way I can make amends to myself for the years of self-abuse and punishment is to remain open to whatever the Universe wants me to experience, no matter how long that is or how it turns out. Instead, I took my licks and kept moving.
One of the most important lessons I learned from that first experience was that I walked in as sort of a doe-eyed ingénue – I believed that because I have spent so much time working on myself and being comfortable with unapologetic authenticity, I made the incorrect assumption that the people I came in contact with were doing the same. It was naïve, and very far from the truth. Most people don’t spend as much time in their entire lifetime on a solitary self-appraisal as I have in the past year. Many don’t have the tools to handle stress and conflict in the healthy ways I have learned, which necessarily do not involve drugs or alcohol. This does not mean that I hold myself out as being above anyone else; rather, I just know that my self-awareness and desire for deep, soulful connection is not shared by not just the dating app population, but most of the world. And you know what? I am fine with that, because there is not a single part of me that feels like I need someone to be okay. I am no longer looking for validation. As I have shared in the past, I am not motivated by “checking the boxes” off of society’s mandated list of successes. I get to be 100% me, all the time. Take it or leave it. I’m good either way. What an incredible gift.
I have since been on a lot of dates. I have met some wonderful people. I have learned a ton about what I am really looking for in a partner. I have had experience in not just setting my own healthy boundaries, but holding them because I know that I am worth it. I have learned how to share my story about being a widow in a way that I am comfortable with. I am finding that it is the most refreshing feeling in the world to be able to share meaningful conversation with absolutely no attachment to where it may or may not lead.
I have also had several first date fiascos and strange interactions, which one would have to expect when engaging with perfect strangers. One person insulted me by suggesting I had too much time on my hands to respond to his messages. When I called him out for it, he tried to back peddle harder than Lance Armstrong and it rapidly devolved into a series of messages ending with "If you don't reply you're missing out on the best sex you ever had." I had one guy not only allow me to split the check (which, to me, is a faux pas if YOU asked ME on the date and it is the first time we are hanging out) but then spent five minutes figuring out how to divide the rest of it, after which he applied a gift card to only his portion of the bill. Another time, when a waiter asked if I wanted another drink and I politely declined, my date dismissed me and said "No, she'll have another" and proceeded to spend 30 minutes talking about motorcycles and muscle cars, barely pausing for breath. I just keep reminding myself that dating is one huge, weird social experiment, and that all of this experience is excellent material for a future book!
After losing Patrick, I did not know if I would ever be capable of connecting with people again. I now know that I am, and that it does not have to be scary because I don’t have to take it so seriously. On my 35th birthday last month, I celebrated with a single candle on my cake, because my wonderful friends reminded me I’m brand new again. I get a fresh start. It feels really, really good.
I woke up just before 2 AM today, wide awake. As someone who has suffered from insomnia on and off for most of my adult life, this isn't an entirely new experience; but, considering what an emotionally draining week it was and how I barely made it to my bed to pass out tonight, it was somewhat surprising. I can usually sleep through the night when I am this tired.
It was four years ago today that my late husband Patrick had his first seizure that led to his diagnosis with glioblastoma. And, it just hit me it's not just the date that is significant - it was just before 2 AM when Patrick's voice roused me from my sleep, finding him sitting on the floor, looking through me instead of at me, saying things that could not be described as words because of the small but deadly tumor that was growing in his right parietal lobe. The exact time I woke up tonight.
The memory of the subconscious is an incredible thing. Apparently, I have some processing to do that is more important than a few extra hours of rest.
This has been a difficult week for me and my family. My 4 year-old niece went to the emergency room last weekend with a 106 degree fever that was making her hallucinate and ask my sister to get the "ooey gooey stuff" off of her. Just two days later my mom got really sick and was admitted to the hospital overnight. (They are both feeling much better now, thankfully.) Seeing my mother in a sterile, artificially lit room lying on a bed donned with overly-bleached sheets was terribly triggering for my PTSD, which I so intimately relate to Patrick's illness and death. The beeping of the monitors, the alarms going off in other rooms, the intermittent shouting of an unruly patient (which thankfully this time was not MY patient), the white board where my mom's pertinent information was kept and where I drew pictures of flowers and bunnies to try and make her smile - it was all too familiar. As I pulled a chair up next to her bed, I felt my pulse speed up. I lowered myself slowly while the overwhelming dread and panic bubbled up under my skin so palpably I thought it would come out my pores. I took slow, deep breaths and tried to hold space for my own pain and discomfort, as well as for the fear and concern I could feel emanating from my parents. It was hard, but I did it using the tools I have worked hard to accumulate.
I have spent a lot of time since losing Patrick, particularly over the last year, contemplating my own mortality. I truly believe that I have accepted the fact that someday, sooner or later, I am going to die. If I have any say over the manner in which it happens, I hope that I will be able to die well. I want to remain focused on quality of life rather than quantity. If I have a prolonged illness, I want to engage palliative care early and often. If curative treatment fails, I want to bring in hospice to assist me and support my loved ones. Thinking about these issues has brought me a surprising amount of peace.
What the experience of this week has showed me, however, is that I still have a long way to go when it comes to accepting the mortality of the people I love. I have not been able to approach the subject with the same measured detachment that I have been able to attain for myself. As I listened intently in that hospital room while my parents recounted everything the doctors told them, I found it incredible difficult to resist the temptation to morph into "crusader mode," donning my cape and letting everyone know what they needed to do. That is exactly what I did with Patrick. I thought if I just managed everyone and everything that was happening well enough, I would be able to control the outcome. I wanted to secure MY outcome, namely that Patrick would miraculously be healed and we would live happily ever after. I was so driven by this obsession that I was perpetually disappointed in what I perceived to be a lack of help from others, failing to see that I was not allowing anyone to help in a meaningful way lest they upset the delicate plans I had in place. I unwittingly caused myself and those well-intentioned people who were afraid to cross my path so much suffering because I could not, and would not, accept an end result contrary to the one I wanted.
There is a part of me that is terrified that losing someone close to me again will actually kill me. Losing Patrick almost did. It is the same part that caused me to isolate myself for years in the wake of his death in an act of self-preservation and a twisted hope that if I didn't let anyone get too close I wouldn't fall apart when they were gone, in one way or another. That scarred, broken piece of my heart went on high alert when I saw my mom in that hospital bed. It wanted to announce "Good news everyone - I am here now. You can all rest easy. I've got this." I sensed, though, that this was an opportunity to try something different. Instead of fighting the feelings and emotions that were being stirred up, I was able to observe them. I did not have to stifle them by taking over control and making other people feel small and insignificant.
This does not mean that I have to sit idly by, ignoring the experience I have as a patient advocate that makes me uniquely qualified to help my mom or anyone else who seeks my assistance. Hardly. She will be the first to tell you that I have still been pretty insistent in offering guidance for navigating the system as it relates to her follow-up care. My experience has given me insight that is useful, and it is important for me to offer it when it is asked for and welcomed. But, what it does mean is that I am able to sit with what's happening without taking responsibility for it. I can finally see that I am not going to be the determinative factor in how things turn out, good or bad. What a relief to realize that I am not God!
When I was three months sober, I had the serenity prayer tattooed on my side: "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." This week's experience allowed me to live that prayer in a way I have not before been able to. I cannot change the fact that the people I love will be broken, hurt, sick, leave, and die. What I can change is how I respond. I am grateful to the Universe for yet another opportunity to discern the difference.
Starting over is hard.
When life falls apart, inevitably after the grieving, healing, and recovering comes a period of rebuilding. Once you figure out who you are, you have the chance to start again and mold your life into what you want it to be. It is exciting. It is unnerving. If looked at through the right lens, it can be seen as the most incredible opportunity. But, it can also provoke a ton of anxiety, poke at old patterns of self-doubt and insecurity, and feel totally overwhelming.
It has been three years since I lost my husband Patrick to brain cancer. I have come farther in the past year than I ever could have imagined. I followed my intuition and left a job that left me physically and emotionally sick. I faced a leveling of my ego as I let go of the identities that defined me. I learned to listen to the quiet voice that shows up in the stillness of meditation which has never steered me in a direction of harm, and I trust that it never will. I took responsibility for my physical health and started treating my body like it was the only one I will ever have and acquiescing to what it asks for, whether that is rest, nourishing food, or vigorous exercise.
Of course, all of this positivity has inevitably been accompanied by the deep pain that seems to be necessary for me to grow. I have intentionally removed myself from most social situations because I have been emotionally unavailable to build meaningful relationships. My life has revolved mostly around solitude interrupted only by brief interludes of human contact, enough that I don't feel completely disconnected from humanity but not so much that I might evoke feelings that precede attachment. This has worked for me for a long time, but recently I have started to feel the pull to open my well-guarded heart again to not just the spirit of the Universe, but also to other living, breathing human beings. This, my friends, is scary territory.
I met Patrick more than seven years ago, and I had eyes for no one else from that point forward. Before that, I spent several years being single, mostly because I hate the awkwardness that is dating. I don't like playing games. I am uncomfortable dealing with people who aren't up front about how they feel. I don't like not knowing where I stand with someone, or wondering whether I am breaking some unwritten rules of engagement because I decide to call someone that I want to talk to without waiting a certain amount of days. As a general rule, what you see is what you get with me, and I have never had a desire to submit to society's protocol on dating. As a result, I just avoided it entirely, save a few bumbling, inelegant forays into the field that often yielded little but discomfort. It's no surprise that my pattern with relationships tends to be establishing mutual attraction, immediately followed by "Let's move in together!" It is my unhealthy but surefire way of avoiding the ambiguity of dating by rushing straight into a serious relationship.
After Patrick died, for the first couple of years I was perfectly comfortable with the idea of becoming an old cat lady who never again risked the excruciating pain of a broken heart. I felt that our love story was beautiful and significant enough to last a lifetime and there was, therefore, no point in putting myself back in a position to experience such extraordinary loss. I had such a huge amount of work to do on reconciling with the woman that was loved by Patrick and the one who was left behind that the very idea of dating again was untenable. Given my past-described experiences, I was fine with the prospect of perpetual singlehood for my remaining time on this planet.
Over the past year however, as my spiritual practice has grown, I have started to realize that there are certain lessons that cannot be simply absorbed through osmosis, watching other people in their relationships while keeping myself safely at a distance. It is easy to feel spiritually evolved while sitting alone on a mountaintop. It is an entirely different challenge to maintain the sense of peace I have found while actually interacting with other human beings. People are unpredictable. They might feel one way one minute, and change their mind the next. They cause hurt feelings. They poke at the dark places in my subconscious that still seek to keep me perpetually restless, irritable and discontent. Why, for heaven's sake, would I voluntarily expose myself to that kind of uncertainty?
The answer to that question has become glaringly obvious: because without allowing for the possibility of the pain that comes when things inevitably end, whether voluntarily or not, I will also never experience the beauty, growth, and wonder that accompanies the phenomenon of coexisting with a partner. Simply put, my soul has a lot more to learn in this lifetime, and part of that learning will necessarily involve a romantic relationship.
This all has started to become clear to me over the last few months. As it did, I started facing questions that I imagine most widowed people deal with: how do I honor the love and relationship with Patrick while still moving forward? How do I bring up this critical experience which has molded me into who I am today to potential suitors without appearing like I am stuck in the past? How can I reconcile my genuine belief that Patrick was my soul mate with the prospect of allowing someone else to walk beside me in this lifetime? How do I avoid the pitfall of constantly comparing the life I once had to the one I have now?
In the past, these questions were enough for me to crawl under the covers and hide from the world, sheltered from confronting them but also prevented from experiencing the real joy that comes with sharing life with a partner. Today, because I want to live my dharma and participate in the spiritual evolution I agreed to undertake on Earth, I don't have to let my fear of these unanswered questions stop me from moving forward in a meaningful way. I have learned how to hold space in my heart for Patrick and our love, a place that is so sacred no one can touch it and that is not in danger of being replaced. I have let go of my worry about what other people will think about me when they see me holding hands with someone else for the first time. I have accepted in the core of my being that Patrick would want me to experience love again and that doing so does not constitute a betrayal of what we had; in fact, it is quite the opposite. I think that the single greatest way I can honor my love with Patrick is by living and loving.
This does not mean that I am going to jump back into old patterns and start actively seeking out a partner. As Seinfeld would say, "Not that there's anything wrong with that," but it's just not where I am at. It is enough for me to simply wake up in the morning with a clear head and ask for the Universe to help me open my heart a little more each day. The rest will take care of itself if and when the time is right. If it turns out that this intuition is wrong and I actually am destined to be a cat lady, that's okay with me, too. I am content with myself and I know that I am enough all on my own. The most important thing is that I acknowledge every day that I am allowed to be happy, and that I accept whatever form that takes. I'm sure this seems like a simple and obvious premise to many, but it has taken a long time for me to get here, and I am extremely grateful.
About a month before Patrick died, in a moment of clarity, we talked about what was going to happen to me when he was gone. I told him that life wouldn't matter anymore. His response was, "You have to make it matter - if you don't, who will?"
It's 3 AM. I stare at the ceiling in the dark, nothing more than a black haze. I try to control my breathing as I feel my heartbeat speeding up. The lump in my throat grows, slowly at first but progressively quicker, until it starts to feel like I am being choked. I count to ten meditatively, letting my thoughts go where they will. Then I count to ten again, and again.
The darkness starts to feel foreboding. It jogs memories of the blackest night of my life where death came and stole my loving husband away from this world years ago. The quick beat of my heart starts to feel like palpitations. The space under my breastbone begins to tighten in increasingly painful, unrelenting contractions.
I start to feel afraid of the dark, like a child who is just learning to go to sleep without a nightlight. I turn my bedside lamp on and switch the TV to some terrible reality show that I have already seen for background noise. I hope against hope that this will be enough to quiet the frantic thoughts running through my head to allow me to go back to sleep.
I wonder briefly if I am having a real cardiac event, but the experience has become familiar enough to tell me otherwise. No, this is a good old fashioned panic attack.
Despite feeling quite the contrary, this not going to kill me. It's just going to make me miserable and scared for long enough to temporarily drain all of my energy. You might think after how many of these I have had, once identifying the source of my symptoms I would be able to simply take a deep breath and let it go. As if knowing the rational, fact-based reasons for these sensations would be sufficient to make them dissipate.
Too bad that isn't how it works. As a wise person once said, "Self-knowledge avails us nothing."
After laying in bed for over two hours, I decide to hit the earliest spin class I can at my cycling studio. It may not fix it, but it might give me a brief reprieve while I focus on not falling off my bike. No such luck. The thoughts continue to fire without ceasing. "Okay fine, I'll go to the gym next!" I spend another hour lifting weights, trying to make my body so tired that my mind can't possibly keep up the barrage of commentary. And still, it continues. I do manage to physically exhaust myself enough that I collapse on my bed upon returning home for almost two full hours. I wake up to a moment of quiet before the chest pain starts again, this time accompanied by beads of sweat on my forehead and nausea in my gut.
Hours later I manage to put on some clean clothes and drive myself to my favorite local coffee shop. Lord knows I don't need any caffeine, but I do know that sitting alone in my bedroom will not help this pass any faster. I watch people come and go. Some look happy, some look stressed, some look indifferent. I know that I have no idea how anyone actually feels, because I look completely normal. All the while, my anxious mind and heart do backflips and keep me right at the edge of a full-blown meltdown.
Eventually, and thankfully, the physical symptoms start to subside, though my brain continues to incessantly run through my self-created list of problems. What are you going to do with yourself? How are you ever going to make enough money to sustain an uncomplicated, quiet life without taking another job that leaves your soul painfully unfulfilled? What if you never feel better than this? My inner asshole, who has been relatively contained as of late, is making up for lost time.
There is some benefit to having years of experience with these often debilitating episodes with anxiety, the most important of which is knowing that it WILL pass. Sometimes it takes days, even weeks, but without fail it always improves. Even looking back at some of the most poignant episodes of panic that occurred when I was diagnosed with PTSD a few years ago reminds me that as excruciating as this feels, it is nowhere near as bad as it once was. In the past, I was not able to leave the house when this happened because a single encounter with an angry person on the freeway would send me spinning out of control. Today, I carried on and practiced as many healthy tools as possible to manage my way through. I didn't eat a sheet cake, instead nourishing my body with exercise and food it likes. I didn't go on a shopping spree for things I don't need with money I don't have. I didn't start a fight with anyone to distract myself from the real source of my discomfort. I sat with it, all damn day. And it's not gone yet, even as I write this.
The reason I share is because anxiety is an invisible foe. It might be afflicting that person who just cut you off on the road, the checker at the grocery store who wasn't friendly during your exchange, or your boss who blew up at you over a seemingly harmless mistake. Or, it might be the girl sitting across from you at the coffee shop, smiling through her pain and just trying to survive one more day. I hate cliche sayings, but the one that certainly applies here is "Be kind, for everyone you meet is fighting a hard battle."
Brief moments of humanity have kept me from falling over the edge more times than I can count. Extend kindness wherever you can. Love your people. Be the most compassionate toward those who throw pain and anger your way, even if it's hard. Because you just don't know.
Anniversaries are hard.
It has been three years today since I said goodbye to my husband and the love of my life, Patrick. Three years since holding his hand as the last breath escaped his lips. Three years since I felt his embrace, touched his skin or saw him smile. Three years since he burst into our home in a fit of excitement over something or nothing, because he was so full of life that the 'nothings' were just as important as the 'somethings.' Three years since he stood in front of the TV doing a silly dance because he knew it would make me laugh. Three years since he called just to tell me how much he loved me. Three years since he looked me in the eyes in that way only he could, already knowing what I wanted to say without uttering a word.
Three years is one thousand ninety-five days. Not that I'm counting.
To be honest, most of the time now I'm not counting. I am pressing forward. I have completely readjusted my priorities. I left a job that was unaligned with my soul. I spend most of my time pursuing spiritual goals rather than material ones. I am still overly careful with my tender heart, but I am learning to let people in again - because that is what Patrick would want, and it's what I want. I don't spend every day in morbid reflection anymore over what might have been if he had never had that seizure; if the doctors had been right the first time, and he hadn't had the most aggressive brain cancer known to mankind; if we had gotten a chance to live the life we hoped to have. I am taking gentle care of myself in every way possible. I am regaining my physical and emotional strength so that I can rejoin the stream of life in the most meaningful way I can. I am proud of the progress I have made and the willingness I have had to face the pain head-on, sober, without ceasing. I have never given up even when I wanted to, or when the desire to be removed from this world felt stronger than the one to stay. I have survived.
But today, I am sad. And that's okay.
What follows is an excerpt of the words I shared at Patrick's Celebration of Life, which was held a few weeks after he died in the room where we first met. I felt compelled to share this so that those of you who did not have the privilege of knowing him in this life might be able to understand in some small way the impact he had on everyone around him.
Patrick always said that he felt like God took both of us, faced us toward each other, and said “Here. This is what you’ve been looking for.” We both knew it would be complicated, but we also knew it would be worth it. From the beginning our relationship was built on mutual respect, a commitment to a lifetime of service to others, and a friendship deeper than either of us could imagine. We met in our recovery fellowship. I remember where I was when I first saw him. There was just something about Patrick O’Leary – I knew my life was never going to be the same.
When we had been dating for a little less than a year, Patrick took his kids to Disneyland for three days. This was the longest we had been apart since we started seeing each other and I literally threw him a welcome home party because I missed him so much. On the door of our apartment, I put a sign that said “Baby, I love you because…” and laminated all of these little pieces of paper with reasons on them. I found the papers in an envelope in one of his boxes, and I would like to read what it said because it gives a small idea of how much he meant to me.
BABY, I LOVE YOU BECAUSE …
You make me feel like the only person you can see, even when we're in a crowded room.
You're as silly and goofy as I am.
You have the biggest heart of anyone I've ever known.
You always want to take care of me in every way you can.
You always tell me how beautiful you think I am, even when I'm a hot mess and you know it.
You always want to spend your time with me.
You're not afraid to talk about our future.
You love me enough to want to spend your life with me.
I know I can trust you with everything, especially my heart.
You're a great example to me of what it means to be a sober member of our fellowship I'm always encouraged to be better because of you.
You're willing to do whatever it takes to help me, no matter what.
You're always thinking about ways to make me happy.
You make my lunch every day and do endless little things to show me how much you love me.
You love being in recovery as much as I do.
You make me feel like I'm a priority all the time.
You forgive me when I'm unforgivable.
You love me even when I make huge mistakes.
You stick with me while I try to figure out how to be the woman you deserve.
You never give up on me.
You're sexy as hell.
You believe in me.
You love your family, especially your kids, in a way that most people never experience.
You're loyal and faithful.
Your kids are awesome.
You allow me to be a part of every aspect of your life.
You're patient with me.
You're my safe place.
You protect me and I know I don't have to worry about anything when you're with me.
You're hilarious and make me laugh so hard my stomach hurts on a regular basis.
My heart is not whole when you're gone.
I get butterflies in my stomach when I think about you.
You get me in a way no one has ever gotten me.
When I picture my life, I can't see it without you.
You're incredibly generous with me and everyone you know.
Did I mention you're sexy as hell?
You're always thinking about my happiness and what you can do to make my day brighter.
You're constantly being of service to others.
You remind me that I'm an example to others, whether I like it or not, and it helps me behave better.
You love chocolate and cheese as much as I do.
We are the same person (and I’m awesome).
We love all the same things.
You love my kitties.
You want to build a life together.
You don’t mind when I dance and sing like an idiot. I think you actually enjoy it.
You’re better that what I pictured when imagining the man I would end up with.
AND FOR A MILLION OTHER REASONS …
I love you with all of my heart.
When Patrick and I had been dating for about six months, we got a pair of swallows tattooed on our shoulders – we each had one. The meaning behind this was that swallows mate for life, and even if one of them dies, the other never has another mate. We knew, after that short amount of time, that we were soul mates. I knew that he would always be “the one,” the true love of my life.
In August 2014, Patrick and I took his kids on an amazing vacation to Maui. We drove the road to Hana, explored waterfalls, swam with sea turtles, took surfing and stand-up paddle boarding lessons. There was no indication that anything was wrong – in fact, he was in pretty much the best shape of his life. We had no idea of what was about to happen, and that our lives were going to be turned upside down forever.
On September 15, 2014, I woke up at 2:30 in the morning to Patrick sitting straight up on the floor speaking really loudly, but everything coming out of his mouth was gibberish. I called 911 right away, thinking that he was having a stroke. He had two seizures on the way to the hospital, which led to a medically-induced coma for 36 hours and four days in the ICU. After that came surgery, months of hospitalizations, radiation, chemotherapy, rehabilitation – the list goes on and on. And while there were some impossibly hard moments, some of which lasted for weeks at a time, I was constantly amazed at the grace and dignity he displayed through all of it. When he came out of his surgery to remove the tumor and was in the recovery room, the first thing he did was crack a joke about how his surgeon was about 12 years old. He made sure that he had his daughter go out and buy me presents for my birthday because we were at in the hospital. He was constantly concerned with how I was, how his family was, and what he could do to make US more comfortable. And that, my friends, was Patrick. Even when he was faced with a diagnosis of terminal cancer, his first thought was how he could help those around him to get through it. While the ten months of his illness were brutal, I wouldn’t trade it for anything. It was the greatest honor of my life to hold his hand every day and let him know how loved he was.
The night he passed, it was just the two of us together. I knew he was still fighting even though he was slowing down. Through my tears I managed to choke out, “I love you, honey. I’m going to be okay. You can go now.” And at that very moment, he took his last breath.
Patrick truly was the best thing that has ever happened to me. He taught me through his example how to be selfless, how to love passionately, how to conduct myself with dignity and grace in the face of the most extreme adversity I could imagine. I knew I wanted to marry him long before he ever got sick, but there were so many times I was afraid that we would never get to see that day. The fact that we were able to get married just six weeks before he passed and committed to love each other forever was a testament to his strength and amazing spirit, and his refusal to lie down for anyone or anything. He changed my entire life. On our wedding day I promised that I would love him every day for the rest of my life, no matter what happens. I intend to honor that promise. I believe that our love story did not end the day he died. He’s with me every day. If you’d like to hear how he’s been visiting me, just ask. And if you’re wondering whether it’s okay to talk to me about him, PLEASE DO. He’s all I want to talk about, so don’t hesitate because you think it will make me too sad.
One of the first doctors who treated Patrick in the ICU was so caring and loving to both of us, and he kept in touch with us long after Patrick was no longer his patient. He sent us a card that I would like to share, because I believe it sums up who Patrick and I were together.
“Dear Patrick and Lisa,
I hope that this card finds you both well and in good spirits. I wanted you both to know that since the very first time I cared for you both, I have always been amazed with the incredible love and devotion you have for each other. Living through cancer is an experience only those who have lived through it can understand, but to do so with the love, commitment and grace you have shown for each other speaks to your incredible will and strength. I just wanted you both to know how much I admire you both and am inspired by your love for each other. Please accept this small gesture of my thanks for your friendship.”
I always said Patrick was larger than life. The fact that he was taken far too soon confirms that I was right. I know he’s up there, watching over all of us, and fulfilling the next phase of his journey undoubtedly with a huge smile on his face and his hand stretched out to help wherever he is needed.
Patrick, please save me a seat next to you at the big meeting in the sky. I promise to make you proud.
These words are as true today as they were three years ago. For those of you who think that sharing this means I am dwelling on the past, or that I haven't moved forward, all I can say is you're wrong. Neither Patrick or I are holding me to the standard symbolized in our puppy love tattoos, but I will always, always love him with a fire that burns deep in my soul.
Love does not die when the incarnation of this human form ends. I continue to honor Patrick, today and every day, by living the best life I can manage and holding space for the hole in my heart that he left behind.
To my bunny, sweet pea, honey, baby, love bug, goobey bopkin head, and all the other silly names I called you - I love you to the moon and back, forever and ever, amen.
I have been thinking a lot about the concept of "home," and what it really means to me. I am sure this is being stirred up as I have spent many months setting up temporary residence with my family, all of my things in a storage unit hundreds of miles away, not feeling particularly rooted to any place or anyone. This question naturally comes up as I shed each of my identities, one by one - lawyer, widow, and even daughter, friend, and auntie.
What do I think of when I picture what "home" is? In the past, it has always conjured up visions of a physical structure, one where my possession are housed, where I go to lay my head at night. But, I have moved so many times since leaving my family for college that I began to question whether it could possibly be the actual brick and mortar that made me feel like I was home. With a few exceptions, I have moved almost every year for the past 17 years, and I certainly have not spent that entire time feeling homeless. If not the structure itself, was it the stuff inside? Well no, that couldn't be it either, because I am constantly acquiring and getting rid of things and I have but a few items left from even several years ago let alone my childhood.
When I started doing some casual research on the subject of home, familiar themes popped up. "A home is a foundation; a place where everything begins." "Home is a safe haven and a comfort zone." "Home is a place where we can truly be ourselves." There were, of course, other ideas that were more directly tied to the concept of a "house" rather than a "home" (i.e. "A home is a place where we build memories as well as future wealth"), but I was more interested in the responses that evoked feelings rather than facts because I have established that, at least for me, home is not the building I live in, nor the things I put inside.
What words do I associate with home? Safe. Comfortable. Peaceful. Warm. Calm. Love. Love - yes, maybe that is what it is all about. As a child, I envisioned my home being where my family was. More recently, it was where my late husband Patrick was. But what about all of the years that I lived alone, or with roommates whom I had no relationship with apart from our physical proximity to one another? I don't remember having a constant feeling of being without a home in those situations. Actually, it was quite the contrary when I lived alone - those years were some of the most grounded I have ever felt.
Another one of the words that popped up frequently in my search was "stable." I constantly saw people talking about how their lives were going to unfold, from vacations they would take to families they would start, once they had a "stable home." According to the Merriam-Webster dictionary, "stability" is defined as "the property of a body that causes it when disturbed from a condition of equilibrium or steady motion to develop forces or moments that restore the original condition." So, it would seem that many people regard home as something that is unchanging and reliable; something we can count on to stay the same, regardless of the circumstances life throws at us. Right there, it should be obvious that this concept of home is a dangerous one, because there is no way to secure life with a safety pin at any point, tethered in time to remain unaltered. As soon as something unexpected occurs, in this scenario the sense of security that home brought would be violently yanked away leaving the person again drifting aimlessly through space. This idea of home is nothing but an illusion, because it assumes that things cannot, will not, and should not change.
I was recently in San Diego for my annual trip where I visit friends and celebrate another year sober. (This time it was ten years, which still blows me away. I know what an absolute miracle it is, and I don't take it for granted anymore.) While I was there, I spoke about my process of letting go of attachment to the different roles I have engendered for myself, and just how hard -- but how freeing -- it has been. A close friend of mine commented that she does not have attachment to her job in the way I did, but that instead her attachment was to her family. I cringed a little when I heard this, beautiful as the intention behind it may have been. What happens if the family unit falls apart at some stage, or a relationship is irreparably damaged? What happens when (not if) members of the family die? Who are you going to be when your husband gets ill, or even when your children are grown and leave the house? Will your sense of home be gutted as well?
Also during my visit, another friend was packing up and getting ready to sell her house. Her husband mentioned to her that the change would be hard, as this was the place where they had all three of their young children; where they took their first steps, formed their first memories, and started becoming tiny people. Having moved out of my childhood house after my freshman year in college, I recalled my own experience with this painful process. I was completely devastated at the time, and angry at my parents for making a decision to leave. I thought, "You can put all of our stuff into some new place, but it will NEVER be home." Now, of course, it has been 16 years since that move and the house they now live in unquestionably has all the feelings that our first house did.
The hardest detachment from "home" that I have ever experienced was when I was forced to move out of the apartment where I lived with Patrick. It was not only where we had built a life together, but it was also where we had gotten married, where I cared for him during his blisteringly painful experience with brain cancer, and, most importantly, where he died. I felt like I was somehow betraying him in leaving, but minus his substantial income and the disgustingly high rent in the Bay Area, I was no longer able to afford to stay. I remember tears streaming down my face as I packed not only our things but the hope of our future into countless boxes. I had to have a loving friend come and take the things of Patrick's to be donated, because I could not stand the thought of watching someone carelessly unload what I had come to view as our lives into a dusty bin to be redistributed. It certainly did not feel like just "stuff." It felt like memories being stripped away from me, replaced by fear that someday it would be as if this part of my life never actually happened.
When I left Northern California in November of last year, I expected my stay with family to be short - maybe a month or two. So, I put all of my worldly possessions inside a 10x15 foot storage unit which is completely full from floor to ceiling with stuff, all of which at some point seemed incredibly important. The largest items are the couch and living room tables that belonged to Patrick. When he was sick, we rarely talked about how it would all end, but one day he looked at me with tears in his eyes and said "I want you to have the sofa." We held each other and cried, as this was his first real acknowledgment of his mortality and the fact that the end of his life was drawing near. Patrick spent almost all of the days he was sick on that sofa, aside from the times he was in the hospital. It was where we laughed, where we cried, where we loved - and my attachment to that piece of furniture has been real. It was symbolic of our love story, of his death, and of my own journey back from the devastation of his loss. Much like when I gave away many of his clothes, I was afraid that letting go of the couch would be like losing him all over again.
For the last few years I have been believing my own delusion that I will again have a home once I move into a place with that sacred sofa. I have been grasping to hold onto a life that no longer exists by holding on to the things that represent that life. What I have refused to see is that no matter where I put that couch, Patrick will never again sit on it. We will not laugh together watching "Elf" at Christmastime. I will not find him lounging there with the Warriors game paused because he knows I don't want to miss a minute. By continually dragging the evidence of our lives with me wherever I go, I am actually causing more harm to myself than good because it allows me to continue relying on people, places and things to give me a false sense of security.
So if it's not the stuff, the people, the actual building, what - and where - is home to be? The answer, for me, is as surprising as it is painfully obvious. The only place that home can possibly exist is within myself. It is the quiet, peaceful place where my soul can rest comfortably no matter where I am. It relies on no one, on nothing, to be okay. It is not dependent on having even basic physical or emotional needs met. Home asks nothing of me, least of all the impossible request that the facts of my life remain unchanged. It needs no specific location, or even roots at all. It is not rattled by wandering the planet without a fixed address, because it does not demand one. Perhaps most importantly, it does not need anyone else to play a part in my story, and it exists whether others come or go. All it needs is me.
It turns out that home is, in fact, where the heart is.
Lisa O'Leary is a lawyer, cat mom, widow, sports enthusiast, truth seeker, soul searcher, meditator, and consciousness practitioner who is actively engaged in quieting down the mind to allow the song to play.